Living with Alzheimer's: Managing Memory Loss, Identity, and Illness

Renée L. Beard

Abstract

Alzheimer’s is ubiquitous. Stories of the heart-wrenching drudgery of care giving, escalating incidence rates, and the new path to a cure just around the corner are everywhere. Yet we rarely see or hear from anyone actually living with AD. The negative portrayals, apocalyptic projections, and promise of cures in the mass media and medical outlets are grossly inaccurate. But they are also an assault on the identities of those with Alzheimer’s. Drawing on an 18-month ethnography observing cognitive evaluations and post-diagnosis interviews with nearly 100 forgetful individuals, this book aims to ... More

Alzheimer’s is ubiquitous. Stories of the heart-wrenching drudgery of care giving, escalating incidence rates, and the new path to a cure just around the corner are everywhere. Yet we rarely see or hear from anyone actually living with AD. The negative portrayals, apocalyptic projections, and promise of cures in the mass media and medical outlets are grossly inaccurate. But they are also an assault on the identities of those with Alzheimer’s. Drawing on an 18-month ethnography observing cognitive evaluations and post-diagnosis interviews with nearly 100 forgetful individuals, this book aims to chip away at this pervasive and persistent destructive trend by revealing what life with memory loss is really like. While diagnosed seniors are ultimately socialized into medicalized interpretations of their forgetfulness, most participants achieve a graceful balance between accepting the medical label and resisting the social stigma that accompanies it. In contrast to what we are led to believe, people with early AD actively and deliberately navigate their lives. Interviews with specialty clinicians and staff from the Alzheimer’s Association reveal that a biomedical ethos generates tensions that constrain the roles older forgetful people can play within these settings. Clinicians and Association staff perpetuate “myths” about “self-loss,” “impending cures,” and the economic and emotional “burden” even if they do not personally believe them. Living with AD ultimately requires managing stigma and presumptions of incompetence in addition to the associated symptoms. Unfortunately, we, the well-meaning public, and not their dementia become the major barrier to a happy life for those affected.